eNET Study

eNET study

Have you or someone you know been diagnosed with a Neuroendocrine Tumor?

  • We are conducting a new study to learn about symptoms and quality of life for patients with Neuroendocrine Tumors.
  • We want you to contribute to our knowledge of these rare diseases.

We are looking for people with:

  • A diagnosis of an advanced Neuroendocrine Tumor that is either metastatic (spread to other organs) or cannot be removed by surgery.
  • Access to an Internet-supported device

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If you would like to share this with family and friends, feel free to provide them with the following link: enet.eurekaplatform.org

About the Study

eNET is a study to test the effectiveness of a Web-based program to collect information about symptoms, lifestyle, quality of life, and well-being for patients with neuroendocrine tumors. It is being run by Dr. Bergsland and doctors at UCSF.

How it Works:

  • All study activities can be done at home or wherever you have access to the Internet (on a computer, tablet, phone, etc).
  • You will be sent a series of surveys every 6 to 12 months for up to 3 years.

eNET is a web-based study!

eNET is a web-based study powered by the Eureka Research Platform. All study activities will be completed through the UCSF Eureka Research website.

Questions? Ready to join? To sign up or learn more, go to enet.eurekaplatform.org. You can contact the study team directly at [email protected] or (415) 353- 7683.

Anyone who is interested can visit the study webpage where they can learn more or join the study.

June 2017, Dr. Emily Bergsland received the Ernest H. Rosenbaum, M.D., Commitment to Patient Care Award for her long-standing dedication to her patients and ongoing efforts to improve care for people with neuroendocrine tumors. The award recognizes clinicians who are deeply committed to the highest quality patient care.

 

In December 2016, Dr. Thomas Hope received the first NETRF/ERF Nuclear Medicine Pilot Research Grant. The Neuroendocrine Tumor Research Foundation (NETRF) established the grant to explore innovations in nuclear medicine focused on diagnosis and treatment. The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) solicited proposals and convened the scientific review panel to select the recipient. Hope’s project is titled “Intra-Arterial Peptide Receptor Radionuclide Therapy (I-A PRRT) using 90Y DOTA-TOC.” The primary goals are to evaluate possible liver, bone marrow and kidney toxicity after hepatic arterial injection and to evaluate imaging tumor response three months after treatment. Dr. Hope’s principal co-investigators are Dr. Emily Bergsland and Dr. Nicholas Fidelman.

 

In 2016, the Neuroendocrine Tumor Research Foundation recognized Dr. Eric Nakakura for his projected titled “Development of a Mouse Model of Pancreatic Neuroendocrine Cancer.” His xenograft mouse model will be useful in helping develop and test potential new therapies for pancreatic neuroendocrine tumors.

 

In 2016, the Neuroendocrine Tumor Research Foundation named Dr. Michael Germanthe NETRF Petersen Investigator for his project titled, “Treating Neuroendocrine Tumors via Synthetic Lethality.” His research aims to analyze how certain pathways interact to control neuroendocrine cell survival and death, and to evaluate synthetic lethal interactions—a gene therapy targeting cancer cells—in a patient-derived xenograft tumor model of pancreatic neuroendocrine tumors.

 

What is PRRT?

PRRT (177Lu-DOTATATE) is currently available at UCSF.

For evaluation, please request an appointment.

PRRT stands for Peptide Receptor Radionuclide Therapy.  Peptide refers to a small molecule that is very similar to the naturally occurring hormone somatostatin.  We call it a somatostatin analog, meaning that it is similar but not identical to somatostatin.  There are a number of somatostatin analogs that are use in patients with neuroendocrine tumors including octreotide, sandostatin, lanreotide.  These peptides bind to the somatostatin receptor that is expressed on the majority of neuroendocrine tumor cells. 

 

When binding to these receptors the peptide is brought into the tumor cell and stays there.  Because neuroendocrine tumor cells are one of the few cells in the body that express somatostatin receptors, we are able to target our peptide to the tumor cells using the receptor.  Radionuclide refers to the radiation that we attach to the peptide. 

 

There are different types of radiation that we can use, but in PRRT all the radiation given off is the type that can be used to kill cells.  Therapy refers to the idea that we are using peptides to target the receptors and bring the radionuclide into the tumor cells in order to treat the cells.  That is PRRT.

 

 

Published guidelines for treatment of NETs

UCSF Drs. Eric Nakakura and Emily Bergsland discuss carcinoid syndrome on ITV

 June 20, 2016

 

Dr. Emily Bergsland - NET Primer

January 24, 2016

 

The Patient & Family Neuroendocrine Tumor (NET) 2016 Conference

January 2016, Mission Bay Conference Center

Hosted by the HDFCCC in cooperation with NorCal CarciNET, NET Research Foundation, and Stanford University Medical Center